Tell Me About Your Annoying Herceptin SE

My mom is lucky, she has no SE from Herceptin, the only annoyance she has is a runny nose after her infusions.  No aches or pains at all.  Her hair is growing back also, even whilst on chemo weekly with the herceptin.

I agree with the slow hair growth.  I've been on Herceptin since the end of July and only have about 4".  No acene but do have a drippy nose the first couple of days after infusion (I'm getting it every week-only 8 more!!!!).  I do have minor joint pain (in the morning and after sitting for awhile) but I'm blaming that on the Arimidex as I really think that is what's causing it (only 4 years 1 month left of that).

Nancy

Nancy

Hi Nanegge,

                 I am also on Herceptin and I get the aches and drippy nose very annoying!!!. I have been finishing my chemo which my last set of tx were abraxane and herceptin. Stopped abraxane due to nerophathy we think some of the pain is from that. But my hips all the way to my feet hurt so I don't know. I am also on meds for the nerophathy but it has not helped much. I noticed your from Maine so am I. I am from the Boothbay Harbor area. We are gearing up now for the tourist season, but with fuel prices I don't know how good the season is going to be. Oh the hair thing mine is growing back but slowly, I really hope to have more by winter!!!! Maine is to cold in the winter for no hair!!!!!

                                                 Bridget

Hello!

Nanegge, I laughed out loud when I read your term "Chemo Mullet"!  That is so funny!!!!  And of course, it describes my current "hairdo" perfectly!  Just not sure what color it is-- grayish brownish blondish, I think.

I came here because I was about to post the same question about Herceptin SE's.  I am having some weird ones.  I have the break-out on my chin (got one now-last H was Monday). I do have the runny nose, which I thought was the Taxol until I started having the Herceptin alone back in February.  For the last 2-3 doses (mine are every three weeks), I get a weird but very, very slight chest pressure/shortness of breath that comes and goes during the day, but never bothers me during exercise.  I'm thinking it might be a bit of an asthmatic thing.  My echo's have been totally normal, so no problems with the heart.  I've also had lots of seasonal allergy symptoms that I've never had in my life-- itchy, watery eyes and sneezing to match my drippy nose.  Can't wait 'til November.

Glad everyone is doing well!  Hugs to all!

Mary Jo

I have terrible aches in my left arm where they've been giving me my chemo (since my chest port is STILL not healed after nearly 6 weeks!) However it is probably due to the Navelbine injected in my vein, not the Herceptin. I have been experiencing more increase in hair loss (not enough to show though)........just enough to force me to clean out the shower drain and hairbrush every day, yuck. The day of my infusions (I go every two weeks) I always get diarrhea and feel a little tired. Also I've been getting very very slight nose bleeds - and a few broken blood vessels in my face - not sure which of the two drugs is causing that. I can't wait for my port to heal so my arm will stop hurting - and can't WAIT to stop the Navelbine (end of August!)

My annoying symptoms were aching in my lower back, muscle degeneration (my arm skin aged 30 years, massage therapist noted last visit I finally was showing some signs of muscle regeneration), fatigue, and an annoying cough/throat clearing/mucus thing that is still with me.  I was taken off Herceptin at the 12th dose (8th after chemo) as my heart function was going downhill.  The third MUGA noted 12% reduction but echo cardiogram disagreed.  Not sure the MUGA is all that conclusive....I was also told that some study in Finland, Norway, some place, was showing that 2 doses is plenty....so my conclusion is, it's a crap shoot!  I am two months off the Herceptin and still have fatigue, some shortness of breath, and the cough thing.  I am her2+, estro/proges-, stage 2, had mastectomy, reconstruction, and sentinel and its two closest friends removed without any sign of spread.  Chemobrain is still upon me as well........oh, and I forgot, drippy nose was with me since chemo (I was told its the lack of nose hair...) and it is still with me although I do have hair back, not MY hair, but hair..........

I just had my last herceptin treatment on Tuesday. How long does it take to feel normal again? Nose drips, the constant tired feeling and slow hair growth. It's been 10 months since my last chemo. I thought the side effects were lingering from chemo since by doctor told me that there were no side effects from herceptin (except for the heart). I just for the first time signed on this site and realize that I am not alone in my symptoms.  

Thanks for that good word.  I still have a long way to go in my treatment and it seems like forever!  Good luck to you!

Hi everyone! 

I have another weird symptom that I think is connected with my Herceptin treatments, but I'm really not sure... I have this strange "sore" feeling in my mouth-- not mouth sores, but just a tenderness, and my lips almost seem swollen.  I notice it most when I have a cold drink, and some things don't taste quite right. Weird, huh?  And of course, as usual right after treatment, I have my regular zit on my chin!!!  Where does that come from????     But, I am truly thankful for the Herceptin, despite the weird SE's!!!

Pat, I like your description of the Tim Conway shuffle-- I have that too-- I feel like a 90 in a 52!  And I am doing the spiked, gelled hair thing too but it's getting longer and wants to stick straight up-- my husband says if I keep fixing it that way, I'll look like Don King-- gee, thanks honey!

Take care, everyone!

Mary Jo

HI, I am new to this thread.   Having weekly Taxol and Herceptin, # 3 of 12 was last Thursday 8/28. This is after  4 dose dense A/C, after which my tumor has shrunk 50%.  Pre surgery - which will be discussed end of September.   

The first tx of T & H  I had MEGA hot flash down to my toe nails and then a burning ring of fire in the "private area", which I was told was "normal"...   They slowed down the drip, added a second bag of saline to help dilute and hydrate and that took care of it. All my vitals remained normal but I was the center of attention for a while since I was doubled over with the ring of fire.   

The 2nd tx I had zebra stripes flashing in front of my eyes with the benedryl - which again is "normal"...   They slowed that down from 10 minutes to 30 minutes with saline to dilute and the stripes disappeared.    

This 3rd tx they gave me decadron (I think) in pill form instead of via IV and I drank, drank, drank (water) before, during and after.   When I asked if I could be dehydrated, they said no, but I needed to have the extra saline to help prevent it.  

Drippy nose, sore toe nails at first, but now very sore finger nails and DRY skin.  Even my face looks like I have dandruff and I only use a cleansing lotion and NO soap on it for many years.   I too feel like my lips are swollen and food either tastes like cardboard or sawdust.  

My hair was gone on day 17 after my first A/C and the only good thing is no shaving with summer time being here.   I do see bits of fuzz on the top of my head and I find that a wig is way too hot. Baseball caps or newsboy caps work best for me.  But then, I am retired, dont have to go out in the "public" and live alone.  

Good luck to everyone and keep smiling - it makes them wonder what you are up to !!

HUGS,  Nancy 

I was worried about the heart affects, but my MUGA scan is unchanged from before tx - 69%, and for my age and overall health - excellent - as no one has 100%.    

I finished Herceptin this past May and I have terrible leg pains.  It is a muscle ache, not bone pain. Had a U/S for clots, had none.  Dr. says it is not circulation but may be nerve damage from chemo.  I will have an EMG test soon. My right hip hurts (scan showed nothing),  I walk like  and feel like I'm 100.  Onco asked how old I was (he did have my chart with him) and I told him 53 going on 103!!!!  Also, my teeth and gums have become very sensitve to cold.  I have to brush my teeth with warm water.  Other than that,  and being VERY tired, I faired pretty well. 

Leftyakanancy and those of you who are still on chemo treatments I offer this advise,

Keep your diet healthy, try to meditate daily and try to get some daily form of exercise. No red meat, no sugar, no processed foods and no artificial anything. You need to keep your body strong so that it can fight. When I was lying on the couch without an ounce of energy and my bones ached, I ALWAYS felt better when I pushed myself to take a walk. I never meditated before chemo but I bought a meditation/visualization tape after my first treatment and have been meditating ever since. 

HI everyone:

No one having any annoying SE?   Last tx I had stomach cramps and chills when they hooked up the herceptin.   Adding saline helped a LOT, after stopping it for about 15 minutes.  All my vitals were good.  

Maybe it is the taxol or the combination of both, but the nails on my big toes lifted off the nail bed, so I snipped them off.  No pain, just very weird.   Lucky me, no bone or joint pains except the usual for an age 62 couch potatoe.  

This past week:  8 tax/herceptin over with, was the best few days in a long time, if you discount the toe nail thing -- Not nearly as fatigued as before.  only 4 more to go, then surgery decision, tests, consultations, etc.

HI Mary Jo:   I think that any kind of moving around like walking regularly or Tai Chi can help.   I am the farthest thing from having any kind of exercise routine, but i do get up and move around most days.   How often do you have herceptin?  Good luck on finishing up your tx.    

Nancy